Archive for Catastrophic illness

Happy Mother’s Day–Dedication to My Daughter, Holly

Posted in Death, Faith, Family, Future, Gratitude, Grief, Hope, Inspiration, Insurance, Kindness, Life, Loss, Love, Mourning, Parenting, Philosophy, Relationships, Thought For Today, Wisdom with tags , , , , , , on May 11, 2014 by Morguie
JJ, Noodle, Harley and Holly  Christmas 2013

JJ, Noodle, Harley and Holly Christmas 2013

hollysfamilyMar3120121

Taken days after we were advised of Baby Noodle’s medical conditions and prognosis, MAR 2012

Happiest Mother’s Day to all who are moms, or have been like a mom to a child.¬† I am dedicating this post to my daughter, Holly. She is a mom with so much strength and love! Holly is my first-born baby girl. She was (still is, actually) affectionately called “Holly Dolly” by everyone as a baby. She makes this mom so proud! I have to tell you why she really is so great in this mother’s eyes — Holly is mom to 2 boys… Justin, whom we call “JJ”, and Nate, better known as “Noodle.”

JJ is a kindergartener. He is such an angelic boy, and a real hit with the ladies. ALL the ladies. He is 6 going on 22 where flirting with the women is concerned! ūüėČ He is going to be a heartbreaker, I think.

Little Nate, our ‘Noodle,’ is a charmer, too. He is just too cute and cuddly. He is extra special, little Noodle.

 

I, better known as “Grammie,” got to be there in the delivery room with mom and dad as mom gave birth. He is almost 3 now. Grammie¬†won’t lie…the birthing process seemed to be going well. But then…Noodle started having trouble getting out. I took one hand and Holly’s hubby, Harley, had her other and we all worked to push, push, push Nate through. The doctor seemed to be moving in slow-motion as the baby’s head remained firmly stuck in the canal…I felt my heart jump…I was afraid. Then after several long seconds, very long seconds, the head came but it took another 90 seconds to get the first shoulder out right behind. Then, finally, the baby was out. But he wasn’t moving. He didn’t cry. They rushed him to the bassinette¬†and a nursing team went into action, an¬†ambu bag employed to suction him. Someone radioed down for a specialist to assist…after a few moments, as I turned to face the corner to pray and beg God for a good sign, the baby sputtered and choked out a cry. They rushed him away to put him in the nursery in an oxygenated incubator. All seemed to turn out okay. Sort of.

 

Months passed, and Noodle seemed to be a colicky boy. He flailed his arms and legs most of the waking hours. Then he started exhibiting signs he had a seizure problem. He was taken several times to the Emergency Room at the hospital, when he’d have seizure-type events. My daughter was terrified. We all became worried when he didn’t make any progress with the normal milestones…not sitting…couldn’t even roll over or hold his head up. Her pediatrician insisted he was fine. But he certainly wasn’t. It took months of red-tape and ball-dropping on the part of the medical insurance and referral people who refused to realize he needed to be seen STAT, by a neurology doctor.

 

After five months, a consult with a specialist down in Los Angeles, finally came. What was only going to be a consultation turned into the worst nightmare. The neuro doctor, who is a teaching specialist for the Adventist healthcare system (read a superior professional in his field), told us they needed the baby to be admitted immediately. He was going to have to run a battery of tests and MRIs and scans, etc.

 

My daughter fell to pieces with terrible worry and angst. I was so worried but tried to encourage her and support her through this awful day. ¬† ¬† It threw a real kink in life. She had to call her husband…his work gave him a lot of shit about trying to get the day off to come down to L.A. to be with Holly and I while we waited through the night in the infant intensive care unit. He was able to come. The two of them tried to get a little sleep in their car. ¬†It was two days later when the doctor called and requested for us to come for an extremely important conference, to learn about the baby’s condition. The three of us were terrified. Holly, and Harley and I went in. This ‘conference’ was major. There was a full medical team of probably 6 or 8 specialists and other support personnel¬†there.

The neuro doctor began to tell us what would become the most difficult news ever. Noodle had a catastrophic and incurable, serious problem…the doctor ran through his monologue. I sat stunned. I was experiencing utter disbelief. Shock? My heart shattered. The seizures were actually infantile spasms. They discovered he also had cerebral palsy plus¬†a rare and life-threatening type of epilepsy…the very worst kind. This was due to a malformation of the underlying structure of the brain which holds the 2 halves of the brain together…the corpus callosum; actually it was almost non-existent.¬†It is responsible for connecting and enabling the right and left brain to coordinate¬†and communicate, etc. The doctor was pretty upset that my daughter’s pediatrician and insurance put off and seriously delayed urgently needed attention…the five months she had struggled to get the referral was inexcusable; he even hand wrote letters to that effect. .

 

He said he doubted that it would have changed the outcome, however. This part of the brain was affected in utero…around 5 months’¬†gestation. It wasn’t genetic. Not metabolic in origin. They just didn’t know how or why. My daughter took perfect care during pregnancy. Wouldn’t take caffeine, tylenol. Nothing. Yet…there are people who use drugs, smoke crack, and indulge in alcohol and cigarettes…why are their babies okay? It isn’t fair. ¬† But, at this medical conference, the words that spilled from this neuro doc seemed to all be very dismal, terrible, and negative. He said the baby would be severely disabled…forever.¬† Probably never walk. Not talk. Not be able to be a normal little boy at all. He would forever be like this.¬† He would start receiving 3 or 4 different types of therapies. He would have to be given medications which would damage his already ¬†poor eyesight. Perhaps leave him blind. He would need intensive medical attention from now on. He would need to have surgeries. He has as much as a 30% chance of dying before he turns 10 years old. I fell apart. The kids looked glazed over. They were trying to take it all in. I think they were in shock. There were specialists now in charge of coordinating his care. I asked the social worker and the counselor if there was anyway they could help find a way to accommodate my daughter and her husband…they had no money for hotel. The hospital, White Memorial, was superb in immediately providing them on-campus boarding and food.

 

I asked if there was ANY positive to this whole prognosis. The doctor was pretty straight-forward and honest with us. This was going to be a life-altering situation for the kids and JJ. When the conference was over, we all left to go into the waiting area until the baby was released. We cried. We were numb.

 

Then, I went home alone; a 75-mile trip, full of utter despair and non-stop tears. I was angry at God. Wait…I decided there wasn’t a God. I went home and told my man the horrible revelation. ¬†I sobbed like I never sobbed in my life. I screamed and hit things, telling God how awful I thought this was of Him to allow to happen to this innocent, beautiful baby boy. I begged God to allow me trade places with my precious Noodle. I’ve lived my life. I had no need for more. I couldn’t lift a burden this onerous from my poor child…I could not remove this suffering and pain from her and Harley. I decided no God would allow such an aberration. Why!? I demanded and prayed and begged for an answer. I needed to understand WHY this was happening. I needed an answer and a good goddamned reason for this. I cried for three solid days. I cannot tell you how painful that week was…emotionally, spiritually, and physically. I wanted to stop breathing. I wanted that baby to have my life. He deserved nothing less than a chance to be a normal little boy. He’d done nothing to deserve this! The burden remains in my heart…the depression…the true grief of this. The joy had been extinguished from life as far as I was concerned.

 

 

My daughter is so special. She has had so much to bear. Terrible angst and many, many trips in ambulances for seizures that got worse. The multiple therapies and appointments. Yet, she managed somehow to stay with her University of Phoenix coursework to become a teacher.¬† She will graduate, getting her Bachelor’s degree June 14.

 

She is selfless and completely focused on those kids and her husband. They have only really begun life at 26 years of age. And this. Forever a world different from¬†any they had planned to make as a family. Yet the love is abundant. They have mastered the art of handling this. I cannot tell you in any words…the pride. I so admire them both for their ability to make it through these storms and keep¬† upbeat attitudes; that all will be okay, somehow. So much love between them.That’s my¬† little girl…so hard to believe. Awesome. Happiest Mother’s Day, Holly Dolly. Mommy loves you so much! You are my hero. You amaze me. God Bless them. And every other family who has so much adversity to address in life. You are beautiful. And…utterly, completely AMAZING.

God, please, if there might be a spare miracle floating around? Would you remember to think of Nate? In the meantime, I’ll hang desperately to¬†my hope. No one can take that away from me. After all, anything is possible, right God? And God…thanks. Thanks for letting us have our beautiful Nate. We are so grateful to have him in our lives. We are learning a lot from him. ¬† ¬† ¬©2014, C.S. Thompson.

My Oldest Daughter, Holly and her sons--- Baby Nate and Justin 2012

My Oldest Daughter, Holly
and her sons— Baby Nate and Justin
2012

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